Tips from Two Moms

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What we learned while searching for resources to help our daughters cope with their pain

You are in the right place.  The TNA is best source of information and resource people you will find.   There really are others who have been down this path and are here to help you.

• KEEP TRACK OF EVERYTHING

Your child will be seeing more than one doctor and the information needs to be kept all together.  Just keep a running diary on your computer, keep it updated and each time you see someone new, print it.  To get a picture of what has happened so far, the doctor will want the facts in a form the can read quickly.  

• WHAT DOCTORS WANT TO KNOW

• Brief health history until onset of pain: for example: born at full tern normal vaccines and childhood illnesses. List any trauma or recent dental work.

 

• Specific details about the onset of pain and initial treatment. From this point on be brief.

 

• Date of treatment or medication including dose and result (meds stopped due to nausea, sleepiness, rash … etc. or pain decreased 50%)

 

• Date patient saw pain specialist or other doctor, treatment and outcome.  I.e.,  Dr. Smith, XYZ block done 30% decrease in jaw pain for 2 weeks.

 

• Date patient started taking medication twice a day

 

• List current current medications and doses.  List all medications not just the TN meds.  You never know what interacts with what.  It took  almost a month before one parent realized that the acne meds was decreasing the effectiveness of the tripletail. - You may be the one who does the digging and figures things out.

• EDUCATE YOURSELF

Learn as much as you can.  This is not a child’s illness so you know just as much as your pediatrician.  A pediatric neurologist hasn’t treated TN and an adult neurologist maybe uncomfortable treating a small child.  So you need to combine everyone’s talent and be the center of communication.

• PRIVACY

Understand that having pain can be very embarrassing and humiliating.  Your child will not want any attention directed to them.  Immediately remove them from any public area when their facial pain strikes and find a quiet, private area where they don’t have to worry who is watching.   

• EXHAUSTION

Many times the facial pain can be not only physically exhausting but mentally exhausting as well.  Your child may want to sleep for several hours after a painfully long attack.

• BRUSHING TEETH (For teeth/mouth triggers)

It is helpful to use warm water and to be very gentle around the “trigger” area in the mouth. 

• DENTIST TIPS (For teeth/mouth triggers)

1. The dentist can warm the water that they use in their mouth.

2. If your child is able to tolerate teeth cleaning, let the dentist now it may take longer so your child can have periods of rest.  You want to avoid keeping the mouth wide open for long periods if the mouth is a trigger.

3. Make sure they understand where the trigger is and to clean that area last and to be very gentle. That area may even need to be avoided all together. 

4. The dentist can put a protective sealant on their teeth to help prevent cavities since your child is most likely avoiding the trigger area. 

• EXTRA CURRICULAR ACTIVITIES

It is important to allow your child to continue with the things that they love.  Guarding them from sports, dance, etc., for the fear that they could have pain is not the answer.  Your child will need an “out” where they can do their best to get a way from their pain and have fun doing something that they really love. 

• FOOD (For teeth/mouth triggers)

1. Avoid trigger foods.  Trigger foods for everyone is different. 

2. Vigorous chewing needs to be avoided such as with many meats, gum, chewy candies and etc. 

3. Avoid foods that require opening the mouth too wide such as large sandwich subs, hot dogs, corn on the cob, apples, hamburgers, etc. 

4. Cut the food up in small bites if possible. 

5. Keep a log of the foods that cause the facial pain so you know which ones to avoid.  Avoid packing these foods in the lunch box. 

6. Also be sure to note the temperature (cold, hot) of the food since this can also be a causative factor.   You may need to avoid ice cream, popsicles and hot chocolate. 

7. Ordering drinks without the ice can be helpful and allowing food/drink that are too warm to cool down. 

• WEATHER (If face is a trigger)

Be sure to protect the head/face from the cold, windy weather.  You may need the school to offer another option to avoid outside recess for your child on these days to help prevent attacks at school. 

• PLAN OF ACTION

Not knowing when the pain could strike, have a plan of action in place for your child, especially when you are not with them. This will help to reduce the fear, anxiety and worry of what to do.  Whenever your child is at school, field trip, church, practice, friends house, etc., always make sure that he/she has a “contact person” who knows what to do if the pain strikes. 

1. How to reach the emergency contact.

2. How to give the needed medication(s).

3. How to provide comfort.

• ACADEMICS and MEDICATIONS

If your child is on medication they may be struggling academically.  The medications are usually “brain relaxers” and they are known for causing academic delay.   If your child is struggling, speak to your doctor.  Your doctor can write a letter to the school to allow your child extra time to complete assignments and to not be timed on tests.

• WHAT YOUR LOCAL SCHOOL DISTRICT CAN DO TO HELP

Learn what you local school has to do to help.  They maybe required to send a home tutor if you child is out for more than 2 weeks. Or maybe your child needs a medical Individual Educational Plan (IEP). The IEP is a legal document that must be followed.  Through this, students are not bound by attendance policies or can get help when they are out or are having more pain.  The meds have an effect on memory and concentration, the school needs to understand this.

• EDUCATE THE SCHOOL NURSE

TN is not a child’s illness so the nurse may not know anything about it.  When your child comes to the nurse's office in pain, the nurse needs to feel comfortable believing your child and calling you immediately.  One child’s pain was in her ear and a school nurse insisted on looking in her ear and taking her temperature before her mother was called.  These routine exams increased the child's pain and made it more difficult to control.

• REASSURE OTHER CHILDREN THAT IT'S NOT CONTAGIOUS  

Reassurance may need to be given to parents and/or other adults as well.

• FIND A SHORT, UNDERSTANDABLE WAY TO EXPLAIN TN TO OTHERS 

One example:  We have 2 types of nerves in our bodies, motor to move the muscles and sensory that sends the messages back to the brain.  Everyone knows what a seizure is - there is a short circuit that causes the muscle nerves to miss-fire and the muscles contract wildly.  It is thought by some that with TN there are blood vessels that for some unknown reason touch the trigeminal nerve in the brain.  This is the nerve gives us all our feeling in our face.  As blood pumps through the vessel, it may cause wear on the myelin sheath that covers all nerves.  When the myelin is worn through, the vessel then hits the sensory trigeminal nerve causing a “pain seizure."  The pain seizure is at the same intensity as an muscle seizure - it causes very strong pain.  That’s why the anti-seizure medications are prescribed.